Letting my traumas speak, so they might be silenced.

denial

So, I am doing this thing that I do. Some like to call it procrastination, but I’ve started to use terms that are more honest wherever possible, so this thing is called “avoidance”.

When the thing cannot be done comfortably, efficiently, without stress, or with relative ease, I avoid doing the thing. “Avoidance”.

Right now it is about the bills, because there is stress, discomfort, inefficiency, and a bit of struggle involved in trying to figure out how to make money multiply without a magic wand or the art of alchemy to assist in the task. I don’t know what to pay and what to leave unpaid. I don’t know who might be gracious and who might attack the credit score I have been working so hard to improve. I know that all of the things need to be paid, eventually. And I know that one way or another, through begging or borrowing or more high interest loans that bury me in even deeper debt, things will be paid, but that doesn’t make the job of maneuvering and managing a too small budget less uncomfortable or less stressful, so I still want to avoid it.

A long overdue blog post is better than an attempt at bill payment … even one that details the stress I feel over the bill payment attempt.

I think that part of this avoidance is built into our DNA. We didn’t survive as a species by running headlong into danger with great stupidity and zero planning. We avoid situations that seem like losing scenarios as a matter of survival. Avoidance helps us stay alive, in many ways, so it can be an excellent mechanism for the continuance of the human race—which is likely a good thing.

But there may also be a negative side to this tendency toward avoidance. That negative side is the part that I think frequently trips me up and leaves me face down on the proverbial pavement of life. It is the tendency of our culture to avoid any sort of suffering, pain, or pretense of unease—or dis-ease—whatsoever. It is the glossing over of the lament in favor of pretending that all is well and good and easy, all of the time. It is the lie that we don’t just avoid the things that are uncomfortable, but that the things that are uncomfortable don’t exist—and if they do exist, that something is wrong and needs to be “fixed” and fixed immediately.

If you’ve read anything else that I have ever written, you already know that I suffer from chronic illness, both mental and physical in nature. Something will always be “wrong” with me. And the desire to either “fix” or deny the existence of the problem is, therefore, always with me. I’ve found, through many therapy sessions and lots of searching of my own spirit, that this desire is based largely on cultural perceptions. It is shameful not to “work”, “have a job”, “do something with your life”, “have a purpose”, and it is shameful to “beg”, “live off other’s hard-earned money”, “take what I didn’t earn”, “play the victim”, “act sick”, “sit on my ass all day”, “be lazy”, or not “suck it up”, “get over it”, “take some Tylenol and get off my butt”, “push through the pain”, or to be like “my friend”, “my husband’s cousin”, or any number of other people and “run 5k’s”, “go to work every day”, “take care of five kids”, even though they have [insert one of my illnesses here] “just like you”.

Not only do I cope with my illness every day, but I deal with the public perceptions and the cultural shame that goes along with being chronically ill.

A court has determined that I cannot work—that there are no jobs that I can do given my particular limitations, diagnoses, skills, educational background, work history, symptoms, and the way that those things intersect with the job market in my geographical location. “There are no jobs.” That is literally in the court transcript for you to read, if you were to read through the lengthy hours of Q and A that were required for us to get to the point where a judge determined that I am disabled.

But that transcript doesn’t matter to probably about 85% of the people who I come into contact with in my day to day interactions. It doesn’t matter because of this negative sense of avoidance. I’m supposed to avoid suffering and illness and flaws and bad shit. I’m not supposed to acknowledge that, but fix it, and fix it fast. I’m not supposed to admit that I can barely sit at this desk right now because of the pain in my back. I’m not supposed to admit that I’m at this desk and not a “work” desk because I am disabled. I’m not supposed to BE disabled. I’m supposed to take some Tylenol and get off my ass and run a 5k like aunt Janet from West Virginia!

Because we avoid suffering. We get over that shit, or we lie about it, or we become the kind of people who complain all the time but only a small, acceptable, mundane amount of complaining that is socially acceptable around the water cooler at our jobs. Because we are allowed to be moderately miserable all the time if we are still productive. But real, serious, deeply affecting problems are not socially accepted. Those we avoid.

I sometimes wonder who decides which challenges are acceptable and which are not.

When all the women have ovaries that stop producing more eggs, we call it menopause and call it normal. When all the men start having limp, less adept penises and lower sperm counts, we call it “erectile dysfunction” and make a billion-dollar industry out of making them hard again, instead of accepting that aging men can’t always perform sexually on command. It’s normal for a woman’s sexual function to change, but it is a problem to avoid and be “fixed” for a man? Who decided that? The pharmaceutical companies? The medical professionals? The sex work industry? Who made this a thing?

And who made being chronically ill unacceptable but being terminally ill perfectly fine? That question makes me sound like an asshole all the time, I know. But it only makes me sound like an asshole because of the perceptions already infused into those terms. Chronically ill. Terminally ill. One is a drain on society. One is a sainted state worthy of all the compassion. We all know which one is which. I’m not the sainted one worthy of all the compassion. I’m the other. And I am an asshole for pointing out that there is a bias. I am an asshole for pointing out that dying faster somehow makes you worthier of care. (At least in the eyes of many in our society, that is—it doesn’t actually make you worthier of care.)

Who decided that I need a “real job” to be treated like a “real person”? Who decided that I am allowed to be treated poorly because I am in a state of poverty—or that I deserve to live in an impoverished state if I cannot work due to illness? Who decided that $750 per month is the amount that a disabled person who has less than 40 work credits should be forced to live on, making this entire post even a thing that exists? And why do I not get any credits for the early years of my work history when I was delivering papers and babysitting, or for the years when I was working two part time jobs and going to school and raising a daughter as a single parent. That was more damn work than I have seen most anyone do—ever. And that doesn’t “count” for anything. Who decided that doesn’t count as work? Who decided I get $750 instead of $3000 because of those years? Who decided that my life isn’t valuable enough to be offered what I need to not be sitting at this desk, in pain, avoiding my bills like the plague.

If I had the plague, I would get more benefits. Because it would kill me. If you are dying they let you have a better quality of life than if you will live. Oh wait … not socially acceptable. We already went over that.

So, this avoidance, this thing that was written into our DNA as a positive survival instinct has somehow become a thing that we use to cover up and shame and deny and harm whatever is connected to our socially unaccepted suffering. And I don’t know that I will ever get a complete, straight answer about how that came to be, or who determined and decided what was or was not acceptable, but I do hope that I will someday begin to shape the conversation around why we do this, and why we need to stop doing this.

We need to stop avoiding suffering and pain and bad shit that happens, because it happens to all of us. It is part of the human experience. And it is an important part of that experience. While much of my suffering was regrettable, and I obviously would choose to go down another path if I could, the person I am today was forged in the flames of that suffering. Those challenges shaped me. And they made me a better person.

They didn’t make me a better person right away. In fact, they led me down a dangerous road to some very dark places. But that happened when I was trying to hide and avoid and stuff away all of the bad things. If I had been able to and allowed to cope with what I had experienced as a child, or a teen, in positive ways—expressing the pain and the betrayal and the confusion and the suffering openly and in a safe space—I would have avoided that road and those places altogether. I might have avoided mental illness and chronic pain altogether. (Nobody knows what causes fibromyalgia, in distinct terms, so I cannot know that for certain, but it is linked with stress and often presents in tandem with post-traumatic stress, so it is possible that without the PTSD there would be no fibromyalgia.) Our society’s insistence that pain be hidden likely caused me more pain.

But now that I am in a space where I am able to process and cope with and express all that I should have been allowed to express all those years ago, I am becoming strong and wise and good in ways I might not have were it not for the experience that I went through.

Lament shapes the spirit in beautiful ways.

Pain makes us compassionate, kind, understanding, gracious, loving, connected, and strong. That is not something that we should hide. And that is certainly not something we should avoid.

We still shouldn’t run, stupidly, toward danger without a plan. But there isn’t a need for us to hide and avoid something that makes us compassionate, kind, understanding, gracious, loving, connected, and strong. Frankly, hiding that seems like a stupid run toward danger … it probably is. And that is probably why so many things about our society today seem so messed up, in the sense where one person refuses to lay down their “right” for the lives of, potentially, thousands of others.

We are in danger, and we are being stupid. Because we have hidden so well and avoided so effectively the thing that makes us compassionate and kind and understanding and gracious and loving and connected and strong, that we have become the sort of society that breaks apart and leaves individuals to be slaughtered as “they”, somehow apart from us and without our compassion, rather than feel the pain of the truth—that we have become so unfeeling that we cannot mourn our own brokenness, so we deny it again and again.

We have put some imagined dessert to rights of the individual above the conscious collective of the society. I now becomes more important than we. And that is a grave error.

We, the people—that is how it begins. Not, I the individual who wants a gun and an erection despite the compassion and the biological facts that are required for me to understand the world around me.

“I don’t suffer. I don’t have pain. I take a Tylenol and go to work. I have rights.”

But that isn’t true. We all suffer. We all have pain. We all have days when no painkiller will dull the ache we feel—be it physical or emotional. And, most importantly, WE have rights—all of us together, in concert, and being accountable to one another. The only way to accurately see that, is to start to uncover the pain and suffering and to acknowledge it, to express it, to cope with it, and to begin shaping yourself and your life into one that has compassion, kindness, understanding, grace, love, connection, and collaborative strength.

Stop the avoidance. Embrace the lament. Feel. Suffer. And come out the other side a better version of yourself.

Documents and documenting are serious themes in the past few weeks to months. It is interesting to me the ways that we are forced or encouraged or inspired to document, and all the different reasons that are used to justify or explain that documentation.

I recently had to make a trip to my local office of the Chicago Housing Authority. I had used their new online participant portal to upload requests for a rent renegotiation due to household income changes in both August and February. In August, they denied my claim, saying I had not attached documents proving my claim—but I literally uploaded them per the instruction of the site, and had copies and receipts of all the attached information. Last week, they claimed that I had never made a request in February, and that my mailed documents of proof (which I had mailed to avoid the same result I was met with in August) went to the wrong address (the address listed on their form and web page, by the way). So, they claimed there was no proof that I ever applied for a renegotiation.

Not true. I had documents and receipts a plenty this time. There was no way I was letting the lack of documents be my downfall this time around.

So, I went into that office with an entire folder full of documents. I brought documents proving I applied with proper documentation in August and was denied. I brought documents proving I applied again in February, and supporting documentation that I deserved the rent adjustment at that time as well. And, for good measure, I brought in documents removing my daughter from my household over a week before she moves into her own apartment. All of those documents were copied and admitted and dealt with by the office manager at the office, and then she said, “Now, the only thing we are missing is two documents signed by your daughter and we can get all of this processed.”

Gaaaahhhhh!!!!

I called my daughter and asked if she would head down to the office after work to sign these added documents. They closed at 5, and she made it there at 4:45, signed the documents, and in the next 30 days, my mailbox will receive documents that tell me whether or not I am allowed the revision in rent, whether or not they will back-date to the dates of application, whether or not I will receive a refund of the monies I overpaid due to these errors on the part of the housing authority, and a document that tells me to come into the office again and sign about 45 other documents so that they can give me documents to take to my landlord, so that he can accept my voucher sans dependent child document and let me keep living in the same home I am currently living in.

If you thought being poor was tied to laziness, you are an idiot. I fill out as much paperwork as any doctor or lawyer I know. I just don’t get paid for filling it out—unless you count rental assistance and food stamps as getting paid, which I don’t, because safe housing and food security are basic human rights. (A fact that most developed countries have embraced and created systems of care to ensure. But not the United States, because we are selfish, entitled brats who believe we somehow earned our privileges—in other words, ignorant assholes.)

And if you thought you heard the word “documentation” enough for a lifetime in my earlier paragraphs, then prepare to be disappointed!

There are all sorts of other forms of documentation that are tied to my disability case. The disability system is such that you are denied the first time. Almost everyone not in a wheelchair, nursing facility, or mental ward is denied. That is just the way it works (inefficiently and expensively). You acquire documents from all of your doctors, you fill out numerous assessments, you add in assessments filled out by those who know you or live with you, and then you wait for documents that say you are denied. After the denial documents, you go find a lawyer, and they make you sign about 87 documents because you must sign disclosure statements for every lawyer who might work on your case, not just the law firm, according to the state, effectively requiring the disabled person to sign the same document 4, 5, or 6 times, depending on the number of lawyers in their particular firm. Then you wait for the exact same assessments to arrive and be filled out another time, and collect the same medical records, but your lawyer asks you to keep them informed of any changes in treatment or diagnosis and to document your wellness or lack thereof, so you give all the paperwork you did last time, plus you begin logging your daily mood, daily function, daily tasks, and any and all changes that happen, to support your case when your redetermination is denied, and then you have to file paperwork requesting a hearing, and get back a document that says you will be given a court date in about 10 to 12 months. Then you document changes and function and symptoms and such for a year, while you wait to bring all the information amassed in the past three years before a judge. Who, if we have done all the things correctly, will create a legal document stating that I am, in fact, disabled.

It isn’t difficult to understand, at this point in the post, why I hate documents. I am so overwhelmed with paper that I sometimes feel it is drowning me, and paper cuts are just par for the course in my situation. If I don’t have any, I worry that I must have missed some paperwork that needs filling out or filing.

But yesterday I was introduced to a new form of documentation.

Yesterday, two friends came over to help me create a video for my fundraising page. And we started by documenting things. One suggested things that we could document, and the other started slowly, but surely, taking video and still footage of all the things. We started with adaptive tools—the things I need on the daily to live life: special knives and peelers and openers for the kitchen, a tool to tie buttons and pull zippers, various adaptive pens and pencils and cutters (because I can’t use scissors without severe pain and injury), and more. Then we moved on to the overflowing basket of medications and the daily pill organizers that are filled with multiple doses of many of those medications. We also printed a copy of my next two weeks of appointments, which required three pages of paper. And we looked up the list of current illnesses, which wasn’t complete since not all of the things are recorded in the same place, but still took almost an entire page. Next was physical therapy and occupational therapy papers that show what exercises I am to be doing daily. We spread them out over the floor, and as I was preparing them I dropped papers that scattered all across the living room. My friends filmed as I sat and worked to collect and organize this pile of documents once more, and caught on camera the fact that I cannot see some of my therapists due to insurance refusals, documenting that my medical needs are sometimes not met because of money. And by that time we were all exhausted and decided that we would need another meeting to document all of the ways that my illnesses affect my life—maybe two.

But this documentation, this mini-documentary of my daily life, being made by the son of two documentarians and his fiancé, was eye-opening and expressive of things that I hadn’t imagined. My life is really difficult. And there are all sorts of proofs of it.

However, the thing that was most shocking to me was that I am doing all these things. I am doing my exercises and using my splints and walking in water to get some cardio and eating 1100 calories and none of them sugar and filing all the papers and bringing in all the documents and taking all the medicines and attending four and five medical appointments each week and stretching and meditating and coloring mandalas and doing art therapy and studying nutrition and gardening and using my paraffin bath and doing yoga and writing and more. I am doing far more than anyone might imagine, because I am doing far more than I could have imagined.

When I look at all the things that make up my life, and I am drowning in the sea of papers, and exhausted or craving chocolate or in pain, and feel insignificant and incapable, I rarely look at the proofs of all that I am doing. I look at all the documents that show I am not “good enough”–poor and sick and lacking. I don’t look at the documentation that shows me doing every possible thing I can do to be the most well I can be. I get dragged down by the negative proofs and don’t even consider that there are positive proofs.

While some might not understand the life of the chronically ill person, and will refuse to believe the proofs laid out in my mini-documentary, I know that I am doing so much hard work to live my best possible life. Whether that means I walked the dog, or I ate vegetables, or I colored for a bit, or I remembered to connect with my breath, relax my face and neck, and engage my core when feeling fearful or overwhelmed on a stressful transit ride, or I washed the dishes, or I asked for help, or I practiced new body mechanics, or I managed to finish an article or blog post, I am doing everything that I can do to live well.

My previous ideas of living well were not good ideas of living well, in many ways. And when my focus shifted from living out my pain in ways that brought more pain to creating a life that included education and progress and sufficiency and stability, I thought that meant I was on the path to living well. And I believed that documents like my resume and my degrees and my personal and professional references were the ones that would bring me other good documents, like the deed to a house and paystubs that showed more than three digits before that decimal point and an insurance card that I could bring to the orthodontist to receive services.

But I had it wrong. None of those documents are proof of living well. I know plenty of people with bigger incomes and better insurance coverage who are not living well, but are full of contempt and hatred and negativity. I know plenty of people with lots of letters behind their name from years of education who are completely ignorant on important points. I know plenty of people who are physically and financially well, but complain every time I see them about one thing or another in their life, refusing to see anything that has good or peace or acceptance or joy at its core and only seeing the negative. None of those people are living well.

Documenting my life started as a project to garner support from others, by offering proofs of my need. And, I suppose, that is still one of the goals of the project. But, it has become much more than that for me. It has become a proof of the fullness of my life, and the extent of my dedication and strength, as I work day after day after day to live a life of wellness—improving my body and healing my mind in any way possible. This video will be something that shows others what dealing with constant physical and mental suffering is about, and give them a glimpse of why my financial need is great at this time, and demonstrating why I am incapable of working enough to support myself and depend upon the generosity of others. But, for me, this video is the catalyst I needed to find self-compassion and to stop denying my tenacious work toward a life well-lived, but accept and proclaim and honor the fact that I am a warrior.

I am not weak, but stronger than almost anyone I know. I am not lazy, but offer my body the rest it needs to heal and cope and survive. I am not stupid, but suffer cognitive impairments due to my illness. I am not reclusive, but work to foster and put energy toward only the best of relationships with the best and most supportive people in my life. I am not crazy, but deal with multiple mental illnesses that affect my thinking and choices. I am not playing the victim, but am coping with the ways that I was truly and deeply victimized by all manner of perpetrators. I am not scared, but am learning to manage hypervigilance and overstimulation and anxiety caused by my diseases. I am not giving up, but am fighting for every moment of every day to create the best possible life I can live with my challenges. I am not begging, but I am placing my need before my community in the hope and the trust that provision will be offered in return. I am not desperate, but I am allowing myself to be vulnerable and open and honest in expressing my struggles. I am not whining, but I am telling the truth about the realities of chronic illness—and if you think that telling my truth is whining, note every time you complain about a thing, and see which of us expresses more complaint per actual struggle (I’ll bet on you, unless you are dying or also have chronic illness). I am not lying, exaggerating, or making things up, but I am telling the harshest of realities without any sugar-coating to make it more palatable or acceptable to others.

And I know that it isn’t very palatable or acceptable to discuss any sort of true suffering in our society. I know that we generally avoid pain, and we lie about who we are and how we are doing on a very regular basis, and we chastise or castigate or cast out any who express in their words or actions or being any hint of the lies we are telling or the avoidance we are seeking. It is the reason we don’t make eye contact with the pan-handling person on the corner, or look down on the addict or the sex worker, or pretend that we “earned” our privileges and not that we are taking part in a system of injustice that is harming others and refusing helps for those in need.

I wonder, though, if it is possible to truly live well when we can’t look in the eyes of the homeless, or see the addict and the sex worker as our equal, and admit that we have privileges and seek to create a more just system that offers basic human rights to all people. And I move toward an answer of “no”. The more I identify with the least and the lowest of the society, and the more I hear people’s judgment and lies and excuses to reject my illness or my need or my deserving assistance, the more I believe that I am living well, and those others are living sad and sorry lives.

I know that I am living well. I am putting every ounce of energy into being stronger, more able, less dependent, more mobile, calmer, more balanced, thinner, more educated, more aware, and just better than I was yesterday, and I am doing it in a way that doesn’t deny my experience, but embraces the reality with which I am faced and by which I am surrounded. I am doing it without shame and with honesty and vulnerability. And I am doing it in ways that recognize my privilege and stand against systemic injustices. I am living well, and am proud to be doing so.

So, I am no longer afraid of or weighed down by documentation. I’m learning to embrace the documents in my experience as proofs of transformation and hard work and betterment. I’m learning to see every piece of paper as a document that shares life and fights disease and seeks equity and justice, even when those papers are also annoyingly redundant and seem ridiculous. And I am also recognizing that every word I write here, and every thank you note sent, and every photo with friends and family and my dog, and every selfie of a new haircut, and every update or post or page that is put out by me or on my behalf or with me tagged is also documentation, and it is documenting a most beautiful life.

Bring on the paperwork, world.

Paper cuts or no, I am ready to keep on documenting and to keep on being the best and the most I am able to be. And no matter how many diagnoses come my way, and no matter how many treatments and therapies are added to my daily routine, I am going to keep on adding documents that show a life of wellness—maybe not in my body, and maybe not in my psychology, but definitely in my spirit.

I will live life well and share a record that screams of legacy and not of lack.